One of the highlights of the ENGAGE conference is when patients who have had more contact with their healthcare system than most of us have in get a chance to share their perspective with a wider audience.
Carly Medosch, a chronic illness advocate, and Kezia Fitzgerald, the co-founder of CareAline Products who has fought non-Hodgkins lymphoma and whose infant daughter died of cancer, shared some of their frustrations based on their multiple encounters with healthcare professionals. At times it felt a little like Rodney Dangerfield meets the Twilight Zone. Here were some of the most interesting points:
The path to being diagnosed with a chronic condition can be scary. Medosch recalled that before she was diagnosed with Crohn’s disease, one doctor suspected her mother of deliberately starving her. Medosch said that at times physicians acted like they didn’t believe her but on the other hand she said one physician tried to persuade her she needed emergency surgery but got infuriated when she wanted a second opinion. Even when you are diagnosed, Medosch observed, it’s a confusing time because you’re unsure where to begin to come to terms with your condition, who to ask for advice and other sources of assistance.
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Not enough recognition of what it is to be a patient. Fitzgerald and Medosch both acknowledged this point. Fitzgerald recalled in her keynote that she had to develop a keen understanding of her daughter’s body language since she couldn’t speak for herself and that helped her understand when she was in pain, when she wasn’t feeling well or was suffering a side effect of the drug.
Why isn’t the patient experience as good as the consumer experience? When I think of the consumer experience, Medosch said, I think of Nordstrom and free parking — a customer service-led business. “But if you go to hospital there’s no free parking, they might leave you in a wheelchair in the hallway on your own for an hour. Office staff aren’t smiling. “People at Disneyland picking up garbage can smile and be nice to you, why can’t healthcare always do that for patients?” Medosch wondered.
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Actually, these were two different points made by two different panelists but they fit together well. It was one of the dominant conversations. Fitzgerald noted that she was initially inclined to never question her doctors’ authority or advice, both as a patient and as a first time mother of two. But the more she saw physicians the more confident she grew in her own knowledge of herself, growing awareness and
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No matter what the labs say, ask what is the patient saying? Although this is an ongoing issue, Fitzgerald noted that a turning point came when There can be a turning point in the doctor-patient relationship
Fitzgerald noted that a turning point came when her doctor said. “I believe you are doing better than your lab results say you are.” The problem with physicians is they tend to defer to their numbers, and don’t necessarily believe patients are fully honest when they say they are doing well.